I was recently diagnosed with MGUS and am being followed by a family practice nurse practitioner affiliated with a large university medical center. She has communicated via email with a staff hematologist regarding my test results, but unfortunately I have many questions she has been unable to answer and she states the hematologist said there is essentially nothing to worry about and didn't feel a referral was indicated.
After doing lots of research online, it appears to me that I fall into the category of having low-intermediate risk MGUS, which warrants follow up every year or two. Perhaps I am making an incorrect assumption, but if I understand the criteria correctly, having one risk factor (elevated kappa free light chains (5.62) and elevated kappa/lambda ratio (5.73) in my case) it would place me in this category. Maybe the levels are not elevated enough to be of concern?
I am hoping that someone with more knowledge and experience with MGUS can correct me if I'm wrong. I just sort of feel like I need to figure this out on my own because I'm not getting much information from my provider.
I really want to thank anyone who would take the time to reply.
Forums
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Re: Do I have low-intermediate risk MGUS?
Hi Skarn1,
Rather than rely on a nurse practitioner or a GP, I would recommend seeing a myeloma specialist at least once to better evaluate your situation. If you let us know what city you are in, folks on this site can make some recommendations.
Rather than rely on a nurse practitioner or a GP, I would recommend seeing a myeloma specialist at least once to better evaluate your situation. If you let us know what city you are in, folks on this site can make some recommendations.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Do I have low-intermediate risk MGUS?
Hi Skarn1,
As you probably already know, you need more information than just your serum free light chain results to determine your risk status. I recently posted about a new study related to risk of progression in MGUS in which I summarized not only the results of the new study, but also the more widely known (and widely accepted) Mayo Clinic model of progression risk. You can find my posting here:
https://myelomabeacon.org/forum/risk-of-progression-with-mgus-new-czech-study-t8714.html
Perhaps you can check the post and then let us know if you have any follow-up questions regarding your risk classification.
If the only risk factor you have is, in fact, the slightly elevated serum kappa-lambda ratio, then it probably isn't critical that you be seen soon by a myeloma specialist to get greater clarity on what sort of additional testing you should have, including regular testing. But it wouldn't hurt to try to make an appointment with a specialist sometime in the next 3-4 months. You can find a list of cancer centers with myeloma specialists at this link:
https://myelomabeacon.org/treatment-centers/
Good luck!
As you probably already know, you need more information than just your serum free light chain results to determine your risk status. I recently posted about a new study related to risk of progression in MGUS in which I summarized not only the results of the new study, but also the more widely known (and widely accepted) Mayo Clinic model of progression risk. You can find my posting here:
https://myelomabeacon.org/forum/risk-of-progression-with-mgus-new-czech-study-t8714.html
Perhaps you can check the post and then let us know if you have any follow-up questions regarding your risk classification.
If the only risk factor you have is, in fact, the slightly elevated serum kappa-lambda ratio, then it probably isn't critical that you be seen soon by a myeloma specialist to get greater clarity on what sort of additional testing you should have, including regular testing. But it wouldn't hurt to try to make an appointment with a specialist sometime in the next 3-4 months. You can find a list of cancer centers with myeloma specialists at this link:
https://myelomabeacon.org/treatment-centers/
Good luck!
Re: Do I have low-intermediate risk MGUS?
Hi Skarn1,
If you do not have an M-spike (M protein, paraprotein), then you probably have light chain MGUS.
I recommend reading the attached article.
van de Donk, NWCJ, et al, "Diagnosis, risk stratification and management of monoclonal gammopathy of undetermined significance and smoldering multiple myeloma," International Journal of Laboratory Hematology, May 2016 (abstract with link to full text of article)
It is a very good read, and up to date as well (2016). There are several parts pertaining to light chain MGUS.
Best wishes,
Ruben
If you do not have an M-spike (M protein, paraprotein), then you probably have light chain MGUS.
I recommend reading the attached article.
van de Donk, NWCJ, et al, "Diagnosis, risk stratification and management of monoclonal gammopathy of undetermined significance and smoldering multiple myeloma," International Journal of Laboratory Hematology, May 2016 (abstract with link to full text of article)
It is a very good read, and up to date as well (2016). There are several parts pertaining to light chain MGUS.
Best wishes,
Ruben
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Ruben_1980 - Name: Ruben_1980
- Who do you know with myeloma?: I have (lambda) Light Chain MGUS
- When were you/they diagnosed?: June 2017
- Age at diagnosis: 36
Re: Do I have low-intermediate risk MGUS?
Ruben,
You are to be commended for the highlighting you did on your attached article. I, too, have been diagnosed with MGUS and find the reading to be overwhelming. Your highlighting helped to focus on appropriate content.
Keith
You are to be commended for the highlighting you did on your attached article. I, too, have been diagnosed with MGUS and find the reading to be overwhelming. Your highlighting helped to focus on appropriate content.
Keith
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Keith
5 posts
• Page 1 of 1